The Hidden Side of Caregiving

Most people look at their husband’s rear with affection. The only time I see it is when I am changing his diaper. No. Not in the metaphorical sense. And not as a joke either. I’m not calling him a baby. I’m not trying to insult his manhood. I 100%, legit, mean that I am changing his diaper.

This isn’t exactly the way I thought I would start telling the story of Jason’s Journey. And it certainly wasn’t the way I thought I would tell it from my side either. But sometimes, it’s hard to start from the beginning. So much happens when something tragic starts and while it does make for a good content it’s often easier to just start with the now. A lot of epic tales have flashbacks and this is how I intend to tell ours.

My brother always said, “Poop will break you.” He wasn’t kidding. He’s a physician and surgeon, so he’s seen a lot. He is also one of the most generous human beings one will ever meet. And even *he* warned that when Jason got to the stage of me having to clean him things would take a turn. And by things, he meant my emotional and mental state.

I love Jason. I really do. He has been the one person who understands me in the way that he does, even though our lives have been anything but…”normal”.  He gets me. My dark jokes. My angry moments. My love of indie music…the arts. And I can always count on him to watch any movie, about anything, in any genre, at any time.  But unfortunately, while we have love for one another, and a very deep one at that, romance in something we forfeited years ago.

Jason and I have been on a very long journey together, twenty four years to be exact, and out of those, twenty two have been me not only living as his wife but also as his counselor, nurse, therapist, and caregiver.

In August of 2002 I was presented with a choice. Do I… A). Get the hell outta dodge, divorce my husband who was left for dead (and very much disabled from a massive brain tumor hemorrhage), to live a life of freedom, romance, affection and love, with another man or B). Stay?

We already know the answer. But what we don’t know is the “why”.  Why did I stay? I was only twenty seven. We had been married for only two years. And he was a man who lost it all. (And by “all” I mean his ability to eat, drink, breath, speak or even lift a finger, in the first year anyway).

I remember the day clearly. The day of “The Why”. The day I made a choice that would impact not only my life but the lives of my parents, my siblings, eventually my children and of course Jason and me.

My father called me into his office in the house I grew up in. Whenever he gestured for one of us to follow him there, we knew it was serious. He pulled me aside and told me how hard life for me could be. He let me know that things would get harder. He also reminded me of how young I was and that I was full of determination, vibrancy, and grit.  He also let me know, that over time, that all wears off.  I was young, I still had a chance at a “normal” life. A life that many women in their twenties dream of having. And often get. But my father was a practical man. He never tried to persuade me one way or the other, he only pointed out the facts. He always trusted me.

And then he asked me, or rather offered me, an out.

An escape.

Freedom.

He told me it was okay for me to bail. That it was okay for me to leave Jason. There was nothing wrong with me getting a divorce. And in that, he assured me two things: One, no one would judge me for leaving Jason and two, if I did leave him, my father would make sure that Jason would be fully taken care of medically, financially, and physically for the rest of his life.

I looked up at my father, as I tend to keep my head down when I am *really* listening to someone, and had only one thing to ask, “Will God, bless me for this?”

“Yes.” He answered as directly as I asked him.

“Then, I’ll stay.”

And as they say, the rest is history. A history I look back on and am very proud of. One I sometimes look back on with regrets. One I sometimes feel like was nothing more than a dream or sometimes a nightmare. Something that never happened. Those are someone else’s memories. How could they possibly be mine?  These are memories of someone I feel sorry for. These are memories of someone I wish I was, memories of someone I sometimes wish I wasn’t.  Memories of someone I admire. Memories of someone I sometimes hate. Memories of pride and humor, exhaustion and strength, memories of sadness and faith. But most of all, all of these memories… are memories that I’ve forgotten belong to me.

Thank you for joining me on this journey, not only the journey of our past and story together but this new journey of self reflection and discovery.

Mission: Memories Unlocked.

Stay tuned until the “next episode” when more memories surface and while more are being made.